← Return to Diagnosed with Ameloblastoma

caw (@caw)

Diagnosed with Ameloblastoma

Head & Neck Cancer | Last Active: 3 days ago | Replies (74)

Comment receiving replies

Hey @caw @colleenyoung

Just joined the community today. Being such a rare tumor, it's hard to find a place where you can have a good discussion with people who understand. Hope it's not too much of an info dump below:

My original ameloblastoma diagnosis was in 2007. Even getting a diagnosis from the biopsy took forever. The oral surgeon initially wanted to perform a resection and titanium plate, we settled on removing the tumor and as much margin as possible while keeping the basis for a normal mandible. Lost 2 teeth. After initial healing, had an autologous bone graft (from far back on my mandible, behind the last tooth), followed by 2 dental implants. After 5 years of followup panoramic X-rays I was pronounced "cured" and told I didn't need to keep up with the panos.

Looking back, that was a mistake – I should have pushed for an annual pano. Based on the pano I had at my dentist a couple of weeks ago, it's very likely back – but in two locations. I still don't regret having conservative surgery, but if the regrowth had been caught sooner/smaller it would have been easier to deal with.

Consulted with an oral surgeon already, now waiting to get the biopsies done and a confirmed diagnosis.

I've asked for genetic screening of the tumor – it appears that the majority of mandibular ameloblastomas are associated with the BRAF V600E mutation, and there are FDA approved drug treatments for some BRAF V600E initiated tumors: combined Dabrafenib-Tratmetinib. Unfortunately outside some very limited studies, nobody seems to be taking drug treatment approach. US studies have basically been 1-patient case studies. Biggest study I could find was 12 patients in Israel. Literally 100% of them had significant tumor shrinkage within 8 weeks. 10 of them had switched from a planned resection to jaw preservation surgery – and the other two were not far behind, likely to switch as well.

It seems to me that there really should be more effort in taking an oncology/drug approach to treating ameloblastomas, rather than an approach of pushing for radical surgery as a first line treatment.

– BRAF inhibitor: a novel therapy for ameloblastoma in mandible https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6328504/
– BRAF-targeted therapy for locally advanced ameloblastoma of the mandible: A potential neoadjuvant strategy. https://ascopubs.org/doi/abs/10.1200/JCO.2022.40.16_suppl.3149
– FDA grants accelerated approval to dabrafenib in combination with trametinib for unresectable or metastatic solid tumors with BRAF V600E mutation https://www.fda.gov/drugs/resources-information-approved-drugs/fda-grants-accelerated-approval-dabrafenib-combination-trametinib-unresectable-or-metastatic-solid

I admit, the full resection scares me. Oral surgeon was already talking about removal of nearly the entire left side of my mandible, fibular flap, etc.

Jump to this post

Replies to "Hey @caw @colleenyoung Just joined the community today. Being such a rare tumor, it's hard to..."

I'm sorry you are going through this. In my case, the tumor was already so large and had penetrated through the mandible, a conservative approach wasn't an option for me. I would be curious to hear what my surgeons have to say about the BRAF therapies. I'll have to ask when I go for follow up this fall.